When it comes to navigation, there is a tendency for us to focus on patients who will be surviving their cancer diagnosis and treatment. More and more patients with metastatic cancer, however, are surviving longer than ever before. I think of them sometimes as the "forgotten survivors." In looking at breast cancer patients, for example, many women survive 3 years, 5 years, even a decade before succumbing to the disease.Here are some pointers in addressing the navigation needs of these patients:
- Education— Patients need to understand that the focus is no longer cure but instead control. The cancer will be treated as a chronic disease and managed as one. Providing analogies of other types of chronic conditions can be helpful in providing this education. (For example, a brittle diabetic takes insulin several times a day to keep his blood sugar level in control. Without such monitoring and medication he would be dead in a matter of days or weeks. So taking medications at specified periods of time, chronically and consistently, is how the cancer will be managed. When one drug stops working, the doctors will recommend switching to another.)
- Financial resources— We can underestimate the financial impact long-term treatment can have on patients and their families. Copayments, missing time from work, or having to quit a job completely can result in families spending their savings on drugs and other care. Whenever possible, link patients with resources that can help offset some of these expenses. Pharmaceutical companies offer discounted drugs, and some nonprofit organizations will pick up the expenses of medications for some patient populations. (For example, Red Devils, based in Maryland, covers hormonal therapy prescription expenses for patients in need.) Getting a family to meet with an accountant as well as a lawyer is reasonable to consider doing too.
- Spirituality- This doesn't mean discussing religion per se. What you want to know is if patients believe in a higher power. Do they pray? Does sitting by the sea give them a sense of peace and comfort? Are they still feeling hopeful? A patient with metastatic disease once told me, "I'm going to be optimistic for as long as it is realistic." Wise words. There are some breast centers that offer retreats for women with metastatic breast cancer. Johns Hopkins is one of them, and these retreats are not exclusively for Hopkins' patients. Profound discussions about spirituality and the soul are incorporated into our 2-day overnight-stay retreats. Faith, hope, peace of mind, and decision-making about end of life are candidly discussed in this setting. Asking patients if they belong to a church or other religious organization can be helpful in determining if they have sought support from this group or not and if not, why not. It's never too soon to engage their spiritual side.
- Phase 1 Clinical Trials- There will be a point when traditional treatments are exhausted. Some patients may wish to pursue other means of treatment in the hope that it will help them survive a bit longer to reach specific goals, such as the birth of a grandchild in a few months. There are also patients who want to contribute to medical research as a way of supporting others who come behind them and are diagnosed as they have been. Whatever the reason, stay in touch with the oncologists taking care of the patient to determine when a discussion about phase 1 clinical trials will be taking place and offer support and resources for obtaining information about these trials. In some cases, the patient may need to travel to participate in them. (The National Institutes of Health in Bethesda, Maryland, is such a place.)
- Hospice— There is a need to bring hospice services into the equation much sooner than it usually is. In the United States, the average number of days that a cancer patient is receiving hospice care is only 5 days; the goal is 6 months to 1 year before the patient succumbs to the cancer. Hospice oftentimes is interpreted as "giving up." It should not be, however. Hospice programs provide excellent resources, including coverage of medications, medical supplies, hospital beds, free counseling, and therapy for the patient and the family in preparing for end of life.
We have the privilege of being in these patients' and families' lives during their most vulnerable time of life. Making sure we are providing them the care and resources they need to cope with approaching the end of life is important for all of them. Your role in ensuring that these resources are not forgotten or aren't provided too late in their care will provide your patients and their families the peace of mind they need to endure their loss.